This chronicle is a declaration of love. A sentimental sequence of words that I wish with all my heart would not come to an end. Four and a half years ago, a doctor confirmed to the Mossos d’Esquadra commissioner Xavier Gámez MartÃn the cruelest of diagnoses: amyotrophic lateral sclerosis. Known and feared by its three letters, ALS is a neuromuscular degenerative disease that slowly and cruelly kills the body, but keeps the brain intact and lucid.
Gámez’s is a body that has stopped moving. She keeps his voice, hoarse and dull for what it came to be. A voice that effectively directs the orchestra that he has set up in his particular universe to be autonomous and a little less dependent.
Starting with gadgets that he insists over and over again that are easy to obtain, “hard foursâ€, and easy to connect and use, Gámez continues to be in charge of the weekly purchases in his house. He has classified into folders the documentation that his wife, Chadia Mokaddim, will need later. Not long ago he surprised her “darling” with a weekend in Madrid that he shared with her without leaving the bed, taking care of everything, routes, tickets, restaurant reservations… In her way They traveled together. Gámez deals with the efforts that have to do with the administration. He has arranged and arranged her funeral. And you don’t need to call your caretaker, who is also your wife, when you want to raise or lower the blinds, turn the light on or off, activate the fan, vary the temperature of some mats strategically placed on your body, listen to music, turn on the television or manage the content of the different platforms. With his voice, he communicates with the outside world and tortures his loved ones by sending bad jokes, the badder the better.
Everything, absolutely everything, is done with a voice that at any moment will be silenced forever. Precisely for this reason, at the end of last year she felt the sudden need to share her resources with other people in a situation of dependency and to make them useful. As? “Against the clock before staying silent.” On January 1, a laborious and strenuous project began, with exhausting days of more than eight hours, because for Gámez speaking at this time is like going up and down several times all the peaks of the Himalayas.
Exclusively with his voice (I know I’ve written it several times, but I find it heroic) he has produced the Guide for dependent people with a warrior spirit. An impeccable 193-page work that many of us would not even be able to start with four hands. A manual to have a more autonomous life with the help of a smartphone and a voice assistant; and that can be downloaded for free on his Twitter account (@JaviGamez_ELA) or on the link that accompanies this article on the La Vanguardia website.
Based on orders, Gámez has made each one of the pages, with a simple model so that the explanations are understandable and useful, attaching photographs, graphics and everything that a good manual has.
From the adjustable bed in his room in his house in Sils, Gámez observes an olive tree that has grown to the rhythm that his body shuts down and the lizard that rears its head on sunny days. In the midst of the uncertainty of those first moments in which fear was rampant, Nur arrived, a golden retriever who lies next to him on the bed and who until recently took a piece of bread from his mouth, dodging the respirator that keeps alive.
Chadia; Nur; his children, Dani, Alex and Pol; his parents, his siblings, his family and his friends are victims of a humor that the ALS has not been able to annihilate and accomplices of a desire to live with dignity that vindicates and disarms us. There is so much honesty in this man, the son of Granada and a civil guard father, that he became a lieutenant and jumped to the Mossos, where he became one of the most beloved and respected commissioners. He became a policeman by vocation and now he gets serious.
He is not afraid of dying, but he demands dignified conditions to continue living. That is why he fights for those who, like him, suffer from a lawless disease because, incomprehensibly, his processing continues to be blocked in the Congress of Deputies.
